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impact FALL 2010 “Gluten gives me diarrhea and bloating but my doctor tested me for celiac disease and I am negative. Do I have gluten sensitivity?” This is a common question we hear in the Celiac Center, and one that can be difficult to answer. A Sensitive Subject: Update on our Current Understanding of Gluten Sensitivity Sonia S. Kupfer, MD The problem lies in the fact that we don’t have D XQLYHUVDOO\ DFFHSWHG GH¿QLWLRQ RI JOXWHQ VHQVLWLYLW\ DOVR FDOOHG JOXWHQ LQWROHUDQFH Moreover, there is overlap with celiac disease DQG LUULWDEOH ERZHO V\QGURPH $V VXFK JOXWHQ VHQVLWLYLW\ ¿QGV LWVHOI LQ ZKDW 'U (OHQD 9HUGX DQG FROOHDJXHV UHFHQWO\ FDOOHG D ³QR PDQ¶V ODQG´ )LJXUH 1HYHUWKHOHVV HPHUJLQJ GDWD LV KHOSLQJ XV WR XQGHUVWDQG WKH VSHFWUXP RI JOXWHQ VHQVLWLYLW\ WKDW HYHQWXDOO\ ZLOO DOORZ XV WR EHWWHU GH¿QH GLDJQRVH DQG WUHDW WKH FRQGLWLRQ ,Q WKH EURDGHVW VHQVH JOXWHQ VHQVLWLYLW\ FDQ EH WKRXJKW RI DV D GLVRUGHU WKDW UHVSRQGV WR H[FOXVLRQ RI JOXWHQ IURP WKH GLHW ³'LVRUGHU´ KHUH FDQ EH GH¿QHG E\ FOLQLFDO V\PSWRPV DEQRUPDO FKDQJHV LQ VPDOO ERZHO RU EORRG DQG or altered immune response when exposed to JOXWHQ 7KH FOLQLFDO V\PSWRPV FDQ UDQJH IURP JDVWURLQWHVWLQDO V\PSWRPV WR QHXURORJLFDO FRQGLWLRQV DPRQJ RWKHUV ,Q JOXWHQ VHQVLWLYLW\ WKHUH FDQ DOVR EH ³QRQVSHFL¿F´ EORRG WHVWV WKDW GR QRW PHHW VWULFW FULWHULD IRU FHOLDF GLVHDVH )LQDOO\ WKHUH LV FRQWURYHUV\ ZKHWKHU JHQHWLF VXVFHSWLELOLW\ HLWKHU +/$'4 RU'4 LV UHTXLUHG IRU JOXWHQ VHQVLWLYLW\ :LWK UHJDUG WR JDVWURLQWHVWLQDO V\PSWRPV such as chronic diarrhea and abdominal EORDWLQJ RQH VWXG\ IRXQG WKDW JHQHWLF VXVFHSWLELOLW\ DQG EORRG WHVWV PLJKW SUHGLFW UHVSRQVH WR D JOXWHQIUHH GLHW LQ SDWLHQWV ZLWK GLDUUKHDSUHGRPLQDQW LUULWDEOH ERZHO V\QGURPH in whom celiac disease has been excluded :LWK UHJDUG WR QHXURORJLFDO SUHVHQWDWLRQ RI JOXWHQ VHQVLWLYLW\ D QXPEHU RI VWXGLHV IURP WKH 8. KDYH FKDUDFWHUL]HG WKH FOLQLFDO VSHFWUXP DQG GLDJQRVWLF DV ZHOO DV WKHUDSHXWLF approaches 7KH PRVW ZLGHO\ GHVFULEHG JOXWHQUHODWHG QHXURORJLFDO FRQGLWLRQV LQFOXGH GLI¿FXOW\ PDLQWDLQLQJ EDODQFH FDOOHG ³JOXWHQ DWD[LD´ DQG QXPEQHVV DQG WLQJOLQJ LQ WKH H[WUHPLWLHV FDOOHG QHXURSDWK\ 7KHUH LV QHHG for further study of clinical manifestations RI JOXWHQ VHQVLWLYLW\ WR GHWHUPLQH ZKLFK V\PSWRPDWLF SDWLHQWV ZRXOG PRVW EHQH¿W IURP JOXWHQIUHH GLHWV ,Q UHJDUG WR LPPXQRORJLFDO FKDQJHV LQ JOXWHQ VHQVLWLYLW\ WZR VWXGLHV VKRZHG WKDW ¿UVWGHJUHH UHODWLYHV RI FHOLDF SDWLHQWV KDYH D ³FHOLDFOLNH´ LPPXQH UHVSRQVH DIWHU EHLQJ H[SRVHG WR JOXWHQ EXW KDG QR IXUWKHU HYLGHQFH of celiac disease 7KHVH VXJJHVWHG WKDW WKHUH FDQ EH DQ DEQRUPDO LPPXQH UHVSRQVH WR JOXWHQ without other features that are classically DVVRFLDWHG ZLWK FHOLDF GLVHDVH ,QWHUHVWLQJO\ these responses appeared to be independent RI JHQHWLF VXVFHSWLELOLW\ )XUWKHU VWXG\ LV DOVR UHTXLUHG WR EHWWHU GH¿QH WKH LPPXQRORJLFDO UHVSRQVH WR JOXWHQ LQ LQGLYLGXDOV ZLWK JOXWHQ VHQVLWLYLW\ $W WKH 8QLYHUVLW\ RI &KLFDJR &HOLDF 'LVHDVH &HQWHU ZH DUH DFWLYHO\ ZRUNLQJ RQ VWXGLHV LQ JOXWHQ VHQVLWLYLW\ ,Q FROODERUDWLRQ ZLWK 'U %DQD -DEUL¶V ODE ZH ZLOO EH ODXQFKLQJ D FOLQLFDO VWXG\ WR GHWHUPLQH QRYHO PDUNHUV WR GLVWLQJXLVK FHOLDF GLVHDVH IURP JOXWHQ VHQVLWLYLW\ ZKLOH SDWLHQWV DUH RQ D JOXWHQIUHH GLHW :H KRSH these and other studies will help to further HOXFLGDWH JOXWHQ VHQVLWLYLW\ DQG WDNH LW RXW RI ³QR PDQ¶V ODQG´ LQWR D PRUH FOHDUO\ GH¿QHG FRQGLWLRQ )RU QRZ , WHOO SDWLHQWV LQ ZKRP celiac disease has been ruled out that they PD\ KDYH JOXWHQ VHQVLWLYLW\ DQG FDQ FRQWLQXH D QXWULWLRXV JOXWHQIUHH GLHW LI LW LV KHOSLQJ ,W Sonia S. Kupfer, MD
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Page 1: A Sensitive Subject: Update on our Current...University of Chicago Comer Children’s Hospital Section Chief, Pediatric Gastroenterology, Hepatology and Nutrition Advisory Board Wendy

impactFALL 2010

“Gluten gives me diarrhea and bloating but my doctor tested me for celiac disease and I am negative. Do I have gluten sensitivity?” This is a common question we hear in the Celiac Center, and one that can be difficult to answer.

A Sensitive Subject: Update on our Current Understanding of Gluten SensitivitySonia S. Kupfer, MD

The problem lies in the fact that we don’t have

Moreover, there is overlap with celiac disease

or altered immune response when exposed to

such as chronic diarrhea and abdominal

in whom celiac disease has been excluded

approaches

for further study of clinical manifestations

of celiac disease

without other features that are classically

these responses appeared to be independent

these and other studies will help to further

celiac disease has been ruled out that they

Sonia S. Kupfer, MD

Page 2: A Sensitive Subject: Update on our Current...University of Chicago Comer Children’s Hospital Section Chief, Pediatric Gastroenterology, Hepatology and Nutrition Advisory Board Wendy

Stefano Guandalini, M.D.Founder and Medical DirectorUniversity of Chicago Comer Children’s Hospital Section Chief, Pediatric Gastroenterology, Hepatology and Nutrition

Advisory BoardWendy Weil, D.P.M., ChairpersonCindy Day Erwin, Vice ChairpersonStuart Gordon, TreasurerBonnie Sclamberg, MembershipLara Field, M.S., R.D., SecretaryTripti Kasal, Immediate Past ChairpersonLisa AikenSusan BlumenfeldCarin FooteJessica FooteGary FrankJoyce FrankDeborah GordonBana Jabri, M.D., Ph.D.Kim KoellerSonia Kupfer, M.D.Laura J. LazarczykJudy PetrungaroGail PierceLori Rowell, MS, RD, LDNCarol Semrad, M.D.Sueson VessPeggy WagenerElizabeth Wall, MS, RD, CNSC, LDNJonathan S. Yaffe, CPA

STAFFCarol M. ShilsonExecutive Director

Ronit RoseProgram Manager

NurAlima GrandisonResearch Coordinator

The University of Chicago Celiac Disease Center is dedicated to raising awareness and diagnosis rates and meeting the critical needs of people affected by celiac disease nationwide through education, research and advocacy. The contents of this newsletter are not intended to diagnose or recommend treatment for celiac disease. Please consult your healthcare provider with questions about your condition. For more information about The University of Chicago Celiac Disease Center, please contact our office:

The University of Chicago Celiac Disease Center5841 S. Maryland Ave., MC 4069Chicago, IL 60637Ph.: (773) 702-7593 Fax: (773) [email protected] www.CeliacDisease.net

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continued sensible research we’ll be better able

REFERENCES:

Between celiac disease and irritable

Figure1. Gluten sensitivity falls between irritable bowel syndrome (IBS) and celiac disease (CD). Used by permission of Nature Publishing Group(1)

send an email with your contact information to [email protected] We will contact you

th

Prometheus Laboratories and Phadia

Page 3: A Sensitive Subject: Update on our Current...University of Chicago Comer Children’s Hospital Section Chief, Pediatric Gastroenterology, Hepatology and Nutrition Advisory Board Wendy

3

Celiac Center at the Port Clinton Art Fair

special opportunity, as well as all the volunteers who participated in

>>Celiac Center boardmembers Bonnie Sclamberg, Susan Blumenfeld and Gail Pierce braved sweltering weather to promote greater awareness of celiac disease at the Port Clinton Art Fair in August.

Bowling and Bocce for Celiac DiseaseThe Celiac Disease database, created three years ago by Drs. Guandalini, Semrad, and Kahn, along with The University of Chicago Celiac Disease Center, continues to expand. The database, managed by Celiac Center Research Coordinator NurAlima Grandison, has three undergraduate research assistants working on it to input the collected data. We continue to enroll both adult and pediatric patients on an on-going basis. We expect to begin work on data analysis this fall, and we hope to produce several meaningful publications from this work over the next few years. The University of Chicago Celiac Disease Center is also working with other institutions on a study on the role of breastfeeding in the timing of gluten introduction and intestinal microbiome on the development of celiac disease. We are serving as one of the regional directors for this study and are currently coordinating study initiation at the ten sites we are overseeing both in the United States and Canada. Our study on immunological mechanisms of celiac disease is beginning to yield fascinating findings based on Dr. Jabri’s research with human tissue from biopsy tissue collected from patients for this study. A publication regarding the findings is currently under review by a major scientific journal. The Eating Behavior Study mentioned in the Summer 2010 newsletter continues to look for more participants. For more information on this or any of the other studies mentioned above, please contact NurAlima Grandison at (773) 702-3572 or [email protected]

$2 MILLION

<<Dr. Guandalini focuses intently on his bocce game.

Help fund the cure: We still need your help to reach our goal. If you‘d like to donate, please contact Carol M. Shilson at (773) 834-0166.

Page 4: A Sensitive Subject: Update on our Current...University of Chicago Comer Children’s Hospital Section Chief, Pediatric Gastroenterology, Hepatology and Nutrition Advisory Board Wendy

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Upcoming Events THE UNIVERSITY OF CHICAGO CELIAC DISEASE CENTER HAS LOTS OF EVENTS COMING UP OVER THE NEXT FEW MONTHS. IN ORDER, THEY ARE:October 9, 2010: Annual Celiac Disease Blood Screening and Q &A Panel. (See article on page 2).

October 21-24, 2010: The University of Chicago Celiac Disease Center will be participating in The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) annual meeting and postgraduate course this October 21st – 24th in New Orleans, LA. NASPGHAN is the only professional society for pediatric gastroenterologists in North America. The University of Chicago Celiac Disease Center will be featured in the exhibit hall of the conference, and will provide information on our innovative program to the largest gathering of pediatric gastroenterologists, hepatologists, research scientists and physician nutritionists throughout the four-day conference.

November 5-8, 2010: The University of Chicago Celiac Disease Center will also be participating in the Annual Food & Nutrition Conference & Expo, the showcase annual meeting for the American Dietetic Association in Boston. This event allows us to meet hundreds of dietitians all over the world. It’s a great opportunity to let them know who we are and that we can be a resource for their newly diagnosed patients, no matter where they live. It also gives us the opportunity to emphasize the importance of the gluten-free diet for diagnosed celiac patients, and to form vitally important relationships and partnerships with companies producing gluten-free food.

November 8-12, 2010: We are thrilled to announce that we will be partnering with Wildfire Restaurants for a week of Gluten Free dining to benefit The University of Chicago Celiac Disease Center! Each night of the week (Monday-Friday), a different Chicago-area Wildfire will host a gluten-free dinner. Tickets will cost $75 each, including a $25 to the Celiac Center. The dates and locations are:

Monday, Nov. 8: ChicagoTuesday, Nov. 9: OakbrookWednesday, Nov. 10: GlenviewThursday, Nov. 11: SchaumburgFriday, Nov. 12: Lincolnshire

Enjoy a four-course gourmet feast with wine pairings. Reservations are required. Please call Shannon Ryan at 312-787-9000 for reservations.December 2-3, 2010: The 5th Annual Preceptorship Program in Celiac Disease. We are still accepting applications from physicians of all specialties and dietitians for the 2010 Preceptorship Program. This is a two-day intensive course that includes clinic observation, lecture, Q & A and case presentation with the various experts in celiac disease at the University of Chicago.

May 6, 2011: The annual Spring Flours™ Event at the Swissôtel in downtown Chicago. As always, a fabulous line-up of Chicago’s finest gourmet gluten-free food, and a fun silent and live auction.

Send good wishes for the Holidays and New Year and help raise funds for our Center.Custom greeting cards are now available for purchase at: http://morethancards.com

Please click on our logo to make sure a portion of proceeds comes to our Center. Please visit our website for more information at:www.CeliacDisease.net

Care Package Partners

Bakery on Main Betty Crocker

Bhuja Bob’s Red Mill

Cabot Creamery Chebe

Enjoy Life Foods Green Giant

Jones Sausage Kettle Cuisine

L & J Popcorn Lärabars

Mary’s Gone Crackers Namaste

Nature Valley Pamela’s

Peanut Butter & Co. Progresso

Protein Plus Peanut Flour Rice Chex

San-J Schar

Mr. Krispers and Crunchmaster

Udi’s

For more information, go to: www.CeliacDisease.net/programs-&-events.


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